Pediatric Palliative Care as Medical Brokerage in Decision-Making

• In Event: Medical Sociology Section Roundtables
  In Refereed Roundtable (90 minute): Table 17. Healthcare Providers & Practice I

Abstract

This research examines how pediatric palliative care shapes medical decision-making within the provider–parent–child triad by conceptualizing palliative professionals as brokers of healthcare communication. As advances in medical technology make it possible to sustain the lives of children with life-threatening or life-limiting conditions, decisions regarding treatment intensity, comfort care, and prognosis have become increasingly complex. In this context, pediatric palliative care emerges as a subspecialty that not only addresses physical, psychological, and spiritual suffering but also facilitates communication among medical teams, parents, and children. Drawing on 16 months of ethnographic observation in two pediatric palliative care programs (one is hospital-based and the other is community-based) in the United States, along with 29 in-depth interviews with healthcare professionals, this study argues that understandings of a meaningful life for seriously ill children are socially constructed and relationally negotiated. Families vary in how they interpret quality of life, balancing emotional connection, protection from suffering, and caregiving capacity when considering life-prolonging or comfort-focused treatments. This paper introduces the concept of medical brokerage to describe how pediatric palliative care professionals translate family values into clinical recommendations, manage prognostic uncertainty, and mediate tensions among medical teams, parents, and, when possible, children. By foregrounding the triadic structure of pediatric care, the study contributes to scholarship on medical authority, family advocacy, relational brokerage, and the moral complexity of decision-making in fragmented healthcare systems, demonstrating how emerging medical specialties reshape decision-making in medicine.

Author

• Ya-Ching Huang, Boston University